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Message Icon Topic: Our baby has Down Syndome...advice needed Post Reply Post New Topic
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Angela
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Quote Angela Replybullet Posted: 06 December 2007 at 3:25am
Originally posted by Israfil

Angela, you disgaree with me for religious reasons alone not necessarily medical one. We don't know God's will and only interpret "will" by what we perceive as either good or bad and whether God decreed it or not. I don't understand your idea of "severe" and "less severe" so maybe you can interpret what you are referring to. I mean, I've actually assessed patients with this genetic disorder so it's not like I'm blabbering about something I don't know.  It's easy to deal with something by putting a religious spin on it, heck I've read cases in India where an autistic child was thought to be sent by God because of its condition. I believe in God's will, but I also believe in the human brain and the intelligence of science. I have spoekn with parents who find it hard to deal with children with disorders. Perhaps looking at things in a religious matter is good, but it is no less sufficient for a medical assessment.


Not all Down's Syndrome children/adults have the same functioning scale.  They like all of us have varying IQs and mental function.  Some of them can learn to read, hold jobs, care for themselves like cooking, laundry and even act.  Chris Burke was on the hit TV show Life Goes On.  There are also some children with Down's Syndrome who have secondary diagnosis or did not receive the proper care in their childhood who must be institutionalized because they cannot care for themselves.

You always point to it being religious in nature with me, sometimes its not.  Sometimes the religion reflects my own feelings and is not the cause of them. 

I'm glad you got to meet one or two people with Down's Syndrome.  I've known people with this condition my entire life.  I lived in a small town with less 900 residents.  I grew up playing with them, talking to them and experiencing their lives as a friend.

A day of clinical study does not make you even remotely qualified to dispense even the slightest professional opinion.  My husband who worked with the handicapped for 10 years would tell you most doctors don't have a clue.  Only the direct care staff.  He dealt with the worst of the worst.  The adult diapers and 350lb man with the mentality of a toddler throwing refridgerators.  And you know what?  He misses every blessed minute of it.  He misses the light in the eyes of the man when he finally can finish the puzzle or the laughter as one of the guys pulls a prank on him. 

These are PEOPLE.  You all are acting like its some sort of choice.  Its not a choice, its a child.  There is no difference in the abortion choice of a "normal" baby and one that "might" not be able to lead a "normal" life. 

For the Stevie's and the Chris Burke's of the world, I hope you all forget the clinical/sterilized eugenics of the world and start viewing the human qualities.
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Angela
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Quote Angela Replybullet Posted: 06 December 2007 at 3:27am
Here is the link for the National Down Syndrome Society...

Go to the right people for the important information...not a cop who seems to be an expert in everything.

http://www.ndss.org/


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Hayfa
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Quote Hayfa Replybullet Posted: 06 December 2007 at 7:37am

Angela, I agree..

And really, it is like saying we can tell who will turn out like what.. And we should "elimate" all of those who are a "burden." The issue is more about how we view our society and our resources. And what we value and where we invest our energy and time.

It can tie into making sure that we have "purity" and the "superior." And really, how do we define a full life. I haveahighereducation degree. Some people don't. And you know what, they don't want to. They have other interests, other roles in life.

And really, what is a "normal" life anyways..

When you do things from your soul, you feel a river moving in you, a joy. Rumi
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Quote abuayisha Replybullet Posted: 06 December 2007 at 8:46am

Originally posted by Angela

So, what is God's will? 

The will of Allah, Most High, has two levels.  First is His legal will, such as ordering us to pray five times daily, fasting, hajj, charity etc.  We are not allowed to question His legal will, saying such things as “why not four prayers daily” or Ramadan should only be 15 days and not an entire month.  The second level is natural occurrences, such as the example of Omar and the plaque.  Omar is not obligated to enter an area of plaque because it is Allah’s will that it was affected by sickness.  If a child is born with two heads or three legs, conjoined twins or other such birth defects, this is Allah’s will, but we are not obliged to not seek remedy to change these happenings.  In other words, to say that if Allah, Most High, did not want him to have two heads, who am I to seek a surgical procedure to remove the other head.  The father in this case does not feel that he is able to bear the difficulties associated with a genetically diseased child and that it may very well tear their family apart.  I believe he has that right.  

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Israfil
 
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Quote Israfil Replybullet Posted: 06 December 2007 at 9:17am

Angela you said:

Not all Down's Syndrome children/adults have the same functioning scale.  They like all of us have varying IQs and mental function. 

Angela, your comment above is the result of reading too much into my post and actually not reading it. If you read, you'd notice what I said in a previous post by the following:

On average, most children that grow up into adults have an average life expectancy of 49.5 years of age with mental retardation that possibly fluctuates between IQ ranges of 50-70 (Considered mild by clinical standards) to moderate mental retardation (35-50).

Cognitive abilities in children vary yes, but their cognitive abilities are limited and children (and adults) with Down Syndrome do not perform tasks the same way we do regardless whether they are on television shows or not.

Some of them can learn to read, hold jobs, care for themselves like cooking, laundry and even act.

Like I said cognitive abilities differ and many individuals suffering from Down Syndrome have underdeveloped motor skills (which is why "special schools are required to assist those with this disease). Your comments here are misleading to those ignorant of Down Syndrome because you are presenting individuals with disorder as if they could function "normally" and although many of them can, again, they require more assistance with tasks than the average "normal" individual.

You always point to it being religious in nature with me

Well you are and it comes out in your writing. It's not a bad thing, it's what I see.

I'm glad you got to meet one or two people with Down's Syndrome.

Where in my writing did you see that I said I "met" one or two people with down syndrome? Again, this is a product of reading too much into my posts rather reading it (also reading my posts with your emotion rather than simply reading it).

I've known people with this condition my entire life.  I lived in a small town with less 900 residents.  I grew up playing with them, talking to them and experiencing their lives as a friend

That is great and its good that individuals such as yourself were able to experience this, however, as I stated above stop reading too much into what I said, rather, read what I say. I know for a fact I have knowledge of this disorder more than majority of the individuals here. I've had the luxury of using FMRI's to look at differences and variability between those with Down's and those without Down's. I've conducted an average of +2500 hours of AFP screening and Quad screening, as well as PAPPA screening for expectant mothers. I've assessed many patients with organic brain damage. Having an amatuer's knowledge of disorders is no substitute with actually practicing.

A day of clinical study does not make you even remotely qualified to dispense even the slightest professional opinion

I again have to remind you about reading too much into what I wrote. did I say 1 day? I've personally assessed many patients with developmental disorders  and down syndrome is one of them. But allow me to clarify, as residents, we are basically Dr.'s in the sense however, because when I went through clinicals I had so many patients (in addition to my other job) I could not possibly focus on one specific individual (or condition) this is why I chose the broad field of Neuroscience, that means, what I've spent thousands of hours on are evaluations using FMRI (Functioning Magnetic Resonance Imaging). Like I said before, I don't blabber about something I truly do not know.

These are PEOPLE.  You all are acting like its some sort of choice

It is every right for every parent to decide what to do with their child, thus, making it their choice. Just because you define your morality on the basis of your faith does not give you or me or anyone here the right to tell someone what to do with their child even if we disagree. I said before that the decision is up to the parents and I refrained from putting my own moral implications in it. I only mentioned on possible defense of someone who may abort their child.

 

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Angela
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Quote Angela Replybullet Posted: 06 December 2007 at 11:31pm
Originally posted by 222dnallohc

Obviously it is forbidden for us to terminate the pregnancy...and I dont want to do that anyway.  My husband unfortunately does not think that he can handle this and he wants me to end the pregnancy.  ...

  I want to raise my son (we found out the baby is a boy), but my husband does not want him.

...  I feel like he is trying to push me to do something I dont believe is right.  ...

What do I do?



Israfil,

READ her post again...

She doesn't need justifications.  She WANTS her baby.

She needs to get both of them into support groups with other parents of Down Syndrome Children.  She needs to meet Down Syndrome children and adults.  Her husband needs to meet some of these wonderful people.

Yes, Down Syndrome people live short lives, hard lives.  But so do cancer kids, children with heart conditions, conjoined twins, premature babies, crack babies, sickle cell babies.

Where does it stop and become eugenics?  Indiana used to force sterilize patients who were mentally retarded.  Here in the US prior and post WWII.  The Nazis sterilized the mentally ill and unfavorable races.

Parents should not be encouraged to abort based on cultural/societal norms.  The world today forgets why we are here, who we are and what we are supposed to be doing.

I thought about this all day... there was a time in the Middle East where girls were considered so undesirable that they were buried alive in the sands at birth.  The Prophet Muhammed (pbuh) stopped this barbaric practice.  He valued life so much. 

Perhaps my faith in God influences some of my views.  But, my humanity influences my views on Abortion.  I've not always been a practicing Christian.  I spent a long time as a lost soul.  Even then I believed that abortion was not the choice. 

In the end, what 222, needs...support.  She needs people to tell her that her son can have a good life.  She needs to know there are resources out there to help her and her husband educate their child.  She needs to know that there are others who have been there that can reach out and help support her.  She doesn't need told things that no one really has any way of knowing.

Today's experts have many new techniques for improving the quality of life for people with disabilities.  Specialized education programs, skills programs and socialization programs.  Her son will be able to go to school, get a job, hang out with people like himself.

These are the things she needs, especially if she's been pressured by someone who's only experience is cultural stigmas and not the reality.

Perhaps I read too much into your post.  I just think people need to understand what she wanted when she started this post.  She wanted support for keeping the child, not assurances it was okay to get rid of it.
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Israfil
 
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Quote Israfil Replybullet Posted: 07 December 2007 at 1:02am

Angela,

You're a "God conscious" person because you sincerely care for this individual that is why I respect you a bunch. I guess what I'm trying to say here as a male is, what she wants is her choice. Her husband trying to prevent her from having the child is not right because in essence, he is telling her what to do with her body. I agree with you in that children with Down Syndrome are persons and deserve the same respect as any human being. I also agree with you in that those living with this genetic disorder can live functional lives (although rather short than average expectancy). I apologize if I sounded cold hearted because I'm not. I love life and wish life to be fulfilled towards all human beings.

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Quote mary68 Replybullet Posted: 27 December 2007 at 1:13pm

Hello.  I want to tell you mystory.  I was pregnant in 1998 and again in 1999.  I had the triple screen tests done, and both times the test came positive for anecenphaly, a form of spinal bifida which means my daughters would not have any brain, or very little.  When a so called friend found out about my first daughter she asked what did my husband and I do to make God punished us.  I thought about it and told her that I do not believe that God is rewarding us, but he isnot punishing us.  That somewhere at sometime my husband and I must have done something to show God that we would treat this child with the love that is due a human being and we would treat that child right.  We did, she came early and we buried her.  The same with my second daughter.    My husband, who is pakistani, never questioned our decision to carry the babies as long as they wanted to go. 

It is a very hard choice and one I would not want anyone to have to make.  We chose to carry the girls and if they had been born alive we would have taken care of them for as long as they lived.  My husband had a hard time with the birth defects.  He felt that it was his fault.  Maybe what he ate or the water he drank, or the illness he had as a child caused it. Of course that isn't true.  Maybe her husband is afraid that it is his fault that the baby is ill.  My husband never told me this, but told this during counseling.  If she is the US there are so many things you can do for the child.  Treatment can begin as soon as the child is born. It is true the defect affects everyone different.  I rode the bus to high school many years ago, and on there were two down syndrome people, a boy and girl, along with a mentally challenged boy.  They went to a workshop, their job.  The two down syndrome people married, and had a normal child.  They were being helped by the girl's mother and father.  So they can have lives.

Okay I am sorry that I rambled, the upshot of it is that she needs to talk with her husband, see what his fears are.  Have him talk with the doctor. Just be prepared of all possibilities. 

I wish you well and will keep you in my prayers.

 

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